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DiscussionWas on active surveillance, now gleason 3+4: Any advice?
Prostate Cancer | Last Active: Mar 7 9:56am | Replies (94)Comment receiving replies
@rlpostrp
Ask your doctor why the heck you were put on Active Surveillance in the first place. If I may assume that you were biopsied with a Gleason 3+3=6 previously, it is my opinion that you STILL should have had the radical prostatectomy "then." I'll repeat this the rest of my life - whatever that may be: The Gleason Score tells you NOTHING about the cellular-level pathology of your cancer. The Gleason score is the small tip of a massive iceberg that lurks under the surface. By waiting to the point that you are now a 3+4=7, you might have taken years off of your life...all to get the warn-fuzzy comfort of the first two years of doing nothing under Active Surveillance. Here is why I say the Gleason Score is nothing by the tip of the iceberg:
I too, upon diagnosis was barely a 3+4=7. I only had 6-10% of "4" rated cells in my biopsy. I was more 3+3=6, but those 6-10% of "4" cells made me the 3+4=7. My urologist is totally against Active Surveillance. He flat-out said: "YOU HAVE CANCER...there is no point doing Active Surveillance for two years, because all you are doing is giving the cancer time to grow. So...I'm taking your prostate (he insisted on surgery)." And HERE is the kicker: Your Gleason Score says NOTHING about the extent of, and cellular pathology of, your prostate cancer. My urologist was overly confident saying "don't worry, we've caught this really early, so you'll be around (alive) for the next 15 years or more (I am 70 years old). Then the post-surgical pathology report came out. I have Extraprostatic Extension (EPE) where the tumor broke through the membranous capsule of the prostate. NOT GOOD. I had "surgical margins" meaning that there was enough tissue outside the prostate capsule due to EPE, that my urologist couldn't remove it all. NOT GOOD. I had left seminal vesicle invasion. REALLY NOT GOOD. I had Cribriform glands (prostate tissue looks like Swiss cheese with holes in it on the microscope slide). REALLY NOT GOOD. ALL of this was not known from the biopsy and resulting Gleason Score. All of that microscopic, cellular pathology put me into the pT3b category. Even though both of my seminal vesicles were removed, along with my two vas deferens, and the prostate itself, I still have cancerous prostate tissue left in me...and it will grow. The nature of the seminal vesicle invasion, means that the cancer has a 25-50% chance of recurring "within" five years of the radical prostatectomy. My doctor was silent and shocked, saying: "it seems that your cancer was more advanced and aggressive than I thought." The overly confident attitude was now much more solemn. My first two PSA tests at 3- and 6-months post-op were fine at < 0.1ng/ml, but I have been referred to a Radiation Oncologist. I met with him, and he said that I wasn't ready "yet" for radiation, but will likely need it. He ordered an "ultra-sensitive PSA" that I will have done this week in timing with my 9-month post-op regular PSA. The radiation oncologist wants to see at least two data points for ultra-sensitive PSA before he decides "when"/"if" I get radiation. He has also been very candid about the great likelihood of lifelong urinary incontinence. I can't handle that...I literally can't handle that. I am just now, finally at 98-99% urinary continence at 9 months post-op. I still have accidents - quick leaks/dribbles - that see me wear a thin Depends Shield, but I hate it. I absolutely am enraged by urinary incontinence and a dead penis. I haven't had an erection in these 9-months post-op, when prior to that at early age 70, I had the virility and "performance" of a 35 year old. The message is quite clear: radiation oncology is NOT a perfected treatment modality. It is still so bad, that they tell you what the negative outcomes of doing it are. They can't seem to fine-focus the radiation beam to the bed of the prostate where the cancer still is, to treat just that area, without frying your urethra and bladder, and potentially your rectum. No thanks. And of course, this blog here is full of men who discuss that their cancer is back 1, or 3, or 5, or even 10 years after radiation therapy. So...radiation therapy doesn't work all of the time. It just delays the inevitable return of the cancer. They really just play the odds. They know it is a slow growing cancer, and that the various treatments (surgery, radiation, ADT/hormonal treatment, etc.) just slow the progression. They know it will come back, but they lie or fool us into thinking we are cured after each phase of treatment. So...long story short: Have the radical prostatectomy NOW, and just hope that your cancer is not as bad as it might potentially be like mine was with the seemingly innocuous "low-moderate risk" Gleason of 3+4=7. And... make sure that you physician orders the Decipher Test on your prostate biopsy or surgical tissue. It is a proprietary genetic test to screen for 22 prostate-specific cancer genes. It is scored 0.1 to 1.0. You want the lowest score possible. The results and what genes you have, offer a stratified, comparative risk assessment for your cancer, and your estimated longevity at 5, 10, and 15 years. The test is only performed by the lab who developed the test: Veracyte Labs in San Diego, CA. Insurance and Medicare cover the test...don't let anyone tell you that it isn't covered. Good luck. Keep us posted with a retrospective intro before your update each posting.
Replies to "Ask your doctor why the heck you were put on Active Surveillance in the first place...."
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@rlpostrp As you have experienced, there are severe side effects from an RP and often a big chance of cancer left behind. A Decipher test could have been done on your biopsy sample to know more about the aggressiveness of your cancer before treatment was begun. A high quality 3T MRI could also have likely detected the EPE beforehand as well. MRI guided SBRT radiation is also much more precise, effective, and safe than what you give radiation credit for. I think the OP of this thread should get a Decipher test and a high quality 3T MRI scan of the pelvic region and then look into various radiation treatments. See my bio for more details.